Julia Hudson’s* son Tyler was a chatty preschooler. But at two-and-a-half, the Hamilton boy changed. “As soon as we left the house, he’d stop talking,” says Tyler’s mom. “At the grocery store, he’d turn his head and stay silent if I or anyone asked him a question.” Normally a chatterbox with his grandparents, Tyler also stopped speaking to them.
“I thought it was just a phase,” says Hudson. “We probably let it go on too long—for about a year.” On a school visit before junior kindergarten, Hudson read an information sheet about typical developmental milestones. “He was on target for everything, but he still wasn’t speaking outside the house.” So she contacted the school board to ask where she could get help for her son. She was given the contact information for Angela McHolm, a child psychologist specializing in selective mutism at the Centre for Psychological Services at the University of Guelph (Ontario) and also at McMaster Children’s Hospital in Hamilton.
When Hudson described her son, McHolm agreed it sounded like selective mutism, an anxiety-based condition. “It’s an excessive fear of being heard or seen speaking in select situations,” explains McHolm. “It develops most commonly in the early school years—a time when other common phobias, such as a fear of the dark, emerge.”
“I started watching my son and could plainly see it was a fear reaction,” says Hudson. “His eyes would widen and he’d step back. We felt guilty and angry with ourselves because we had been pushing him to speak. It was the exact wrong thing to do.”
All kids with selective mutism feel less comfortable speaking in various situations, says McHolm. But where and how they speak varies from child to child. “Some kids with selective mutism speak everywhere, but the quality of their speech varies. They may use fewer words, speak softly or only whisper. Typically, these kids speak more freely at home with immediate family and are less comfortable speaking at school.”
Says Carrie Moore* of Thornhill, Ont., about her son Joshua (then three): “We’d be chatting in public and if someone walked by, he’d stop talking mid-sentence—like turning off a switch. When he was four, he’d cover his mouth if something was funny so people wouldn’t see him smiling, and he still does this sometimes (at eight).” Although he never sang at school, he belted out all the school songs at home. “Teachers thought he hated music or just wasn’t paying attention.”
Like Joshua, many kids with selective mutism are misunderstood. “Some are seen as being oppositional or defiant,” says McHolm. “But really the child can’t speak because he’s paralyzed by intense anxiety.” Children with selective mutism might have toileting accidents because they don’t want to attract attention by visiting the washroom.
While these kids are silent, their parents quickly learn to speak up. Many say the quest for help is complicated, long, expensive and often disappointing. After Rebecca Mason,* from Toronto, consulted her family doctor about her daughter Ellie (then three), they faced waiting lists. Eventually, a psychologist diagnosed selective mutism and met with Ellie for weekly hour-long play therapy sessions over seven months at a hospital-based child and adolescent mental health clinic. “The cost was covered by OHIP, but I got no feedback and nothing improved,” she says. “I got the impression the psychologist had no experience with selective mutism.”
At school, Mason faced similar frustrations. “I was assured that Ellie would grow out of it. These kids are often overlooked at school because they don’t cause any trouble. They’re following rules to a T because they don’t want to be singled out.” Finally, after “scouring the Internet” and speaking to friends, she discovered a psychologist experienced in this area. They met with her about five times during the year. “She never asked Ellie direct questions, so there was no pressure,” says Mason. Instead, they played the board game Guess Who? together. Ellie was told she could whisper the answer to her mom if she liked.
The psychologist also showed Ellie pictures, ranging from happy faces to scared faces, to find out where, when and to whom she felt most comfortable talking. For example, she asked Ellie to circle how she felt when the teacher called on her. After several sessions, Mason invited the psychologist to a school meeting with the teacher and the principal. “The psychologist explained that selective mutism is an actual phobia that needs to be treated,” says Mason. “They listened because it wasn’t coming from me. The biggest obstacle is having other people not think I’m insane. It feels like nobody knows about this condition.”
Although Mason felt relieved to get skilled help, she had to pay $175 an hour for it. Her husband’s work insurance only covered $500, so it didn’t go far.
“Parents have to play a key and front-line role in intervening and supporting their child,” says McHolm. “They often have to take the lead in educating the professionals they’re working with.”
Hudson did exactly that. First she asked her son’s classroom teacher and the learning resource teacher to read Helping Your Child with Selective Mutism, the book written by McHolm and two other specialists. For ongoing advice, Hudson and her husband met six times (at $125 per one-hour meeting) with McHolm and also emailed her questions. Then Hudson set up a one-hour conference call with McHolm and Tyler’s teachers. Finally, she asked her employer for Fridays off so she could work with her son at school.
For their program, the Hudsons used McHolm’s “exposure hierarchy” or stepladder approach. Parents and educators identify people, places and activities that enable a child to speak most comfortably. Then, gradually, in small steps, the child practises speaking in different places, with different people. Since Tyler spoke most confidently with his parents at home, they would need to come into school and act as a “communication bridge.”
Twice a week for 15 minutes to an hour, the Hudsons met Tyler at school starting in the September of his junior kindergarten year. Initially, they played with Thomas the Tank Engine together in a room. “We used activities that made him so excited, he didn’t think about the fact that he was talking at school,” says Hudson. In later visits, they threw paper airplanes together in the school hallways — saying 1, 2, 3 before each launch. Eventually, they moved their playtime to the gymnasium and to a room still closer to the classroom. Progress was small but steady. By March, he was whispering at school.
Finally, Hudson brought the airplanes into Tyler’s classroom. “The children were fascinated and joined us at the table.” On the last day of class in June, Tyler held up a plane and spoke to his friends: “Hey, guys—you have to throw it like this!” That was a breakthrough.
Mason, with the help of a psychologist and books, ran a similar program at school for her daughter.
If families are offered treatment through the school, a speech-language pathologist is often brought in. “Speech-language pathologists have much to offer these kids, but selective mutism is not primarily a speech and language issue — it’s a mental health issue,” says McHolm. “A collaborative approach involving parents, caregivers and various professionals works best.”
Finding those professional collaborators can be a difficult task. After watching a documentary featuring Elisa Shipon-Blum, director of the Selective Mutism Anxiety Research and Treatment Center in Philadelphia, Carrie Moore shelled out $700 for a one-hour phone consultation. “She gave us concrete strategies,” she says. “It was the best money I ever spent.”
Parents like Moore know that they don’t have time to lose. “Early intervention is best,” says McHolm. “Kids don’t just outgrow it. The longer the problem persists, the harder it is to overcome. I see 16-year-olds who have been mute their whole school career. By then, the possibility of peer friendships, post-secondary school and a romantic relationship seems daunting.”
Fortunately, with a lot of hard work, kids can improve. Now that Ellie is six, Mason still does her program at school. “Ellie talks more with classmates on the playground and with neighbours,” she says. “With all the work we’ve put into this, the progress is pretty small.” As Ellie tells her mom, “I try to talk, but my mouth won’t make the sounds. My words are stuck.”
Carrie Moore sees her son blossoming. At a recent school performance, Joshua, now eight, sang a song—complete with hand motions. “I cried through the whole thing. The selective mutism is still there but much better,” she says. Nonetheless, she wonders why it was so challenging to get help. “This has been my life. I’d go to sleep thinking about how I could help my son the next day. It’s frustrating I had to figure this all out myself.”
And three years after his diagnosis, Tyler Hudson, now five-and-a-half, is “doing fine,” says his mom. “He’s hard on himself though. We’re paying attention to watching his anxiety—it’s always in the back of our minds.”
“Some children may seem shy and quiet when first adjusting to a new school or daycare. But if you’re still concerned about your child after a reasonable adjustment period of a month or two, speak to your family physician or paediatrician,” says child psychologist Angela McHolm. After ruling out physical causes, such as hearing difficulties, the doctor may refer you to children’s mental health services. A social worker or psychologist can do an initial assessment of general development and speech and language issues, including screening for mental health.
• Selective mutism affects up to two percent of school-aged children. • Immigrant children from language minority families are three times more likely to develop selective mutism. • Risk factors include family history of anxiety, shyness or selective mutism, as well as early speech-language difficulties and adjusting to a new culture. • Approximately one-third of children with selective mutism have some kind of early speech-language difficulty. • Children with selective mutism are also at risk of developing other forms of anxiety, social anxiety being the most common, followed by separation anxiety and perfectionism.
*Names changed by request.